Resilience (10 page)

In 2005, it seemed as if the cancer had been chased away. Maybe I had been right to deny fear a place in my life. Cancer was already scarring my body, taking my hair and my strength, taking a year of my life. I was right, I thought, not to hand it any more than it took by force. I still think that was right. But I was wrong and arrogant to think that I had somehow beaten back the disease.

In 2007, it was back. Spring was teasing us in Chapel Hill: The days were warm and bright, but by sunset winter reminded us that it was not quite done with us. And then it all seemed not to matter, except to think that the weather was mocking us. The cancer was back. Well, I suppose the doctors would say that it had never really gone. I thought I had chased it away with chemotherapy, with a surgery that left my breast disfigured, and with a month and a half of daily radiation two years before. But I had only chased away the big pieces; the smallest of pieces had stayed, hidden from scans, too small for imaging; they had stayed and then grown. And now here it was again, now grown, now in its new home. No longer in my breast, it had spread to my bones, maybe my lungs, maybe my liver. And it wasn't leaving. Not ever. In that moment, when I found out for certain that I would have cancer in me every single day until the one day it finally took my life, all the reasons to live and the reasons to die, the way to live if I could, all danced before me, twirling, enticing, until I chose a partner from among them. Live. Die. Fight. Curl up. Look for a hug. Give a hug. Cry. Cry. Cry.

Could there be a reason to die? “No” is the obvious answer, and it would be easy for me to say the conventional no, there is no reason to die. But if you had lost a child—as I had two weeks short of eleven years before I sat in that hospital room waiting for the results of the bone scans—you might see it a different way. Death looks different to someone who has placed a child in the ground. It is not as frightening. In fact, it is in some way buried deep within you almost a relief. The splendid author Mark Helprin wrote, in the introduction to
Almost Spring
by Gordon Livingston, “If you were on a ship battered by immense waves (and, believe me, you are) that swept your child from your arms would you not (given that you had no others for whom to remain) throw yourself into the deep, hoping for the chance that in the vast black ocean you might grab onto him? Comforted just to know that you would suffer the same fate? And if you had to remain, to protect others, would you not dream all your life of the day when, your responsibilities over, you would finally get to the sea?” It is not a death wish. It is an appreciation that there might be in death some relief that life itself could never offer.

But I did not want to dance with death.

What were the reasons to live? They lived and breathed before me. My children, the “others for whom to remain,” certainly. I had buried Wade, but his sister Cate had just turned twenty-five, and, as strong as she was, I did not want her to test whether she was strong enough to lose any more of her family. Did Emma Claire, brilliant and fragile and kind, have the tools at eight years old to deal with cancer that I would surely have to tell her could take my life? And Jack, still six and precious and charmed—how hard would I have to make the news to break through his steadfast optimism? And Wade's death had reminded me what a gift life is, not to be taken for granted on a single day. I thought of the people who had written me in 2004—and many were writing again—who had said that you are alive today and that is a victory. The only answer was to live, as long and as well as I could. I determined, as I thought of them—and I recommit every time I look at them—to live long enough to die of something other than cancer. There is, I know, a continued arrogance in that.

My husband of almost thirty years sat next to me in a tiny basement examination room at the hospital as we got the news that the cancer had metastasized. The last three months had been hard. I had come to know his imperfections, and my sense of what our marriage meant, of who I was, of what was to happen to us and all we had done together, had been roiling in my head every minute of every day since. But here on this day, calm set in. John had been campaigning in Iowa as a candidate for the Democratic nomination for president, and, of course, he had come home for my tests, come home to the somber words of the doctor, come home to my frightened voice. It wasn't just that he was there—how could he not be?—it was the look of fear on his face. It was clear that through all that had happened, he never thought he would lose me. He counted, as I did, on the seemingly immutable fact that we had a profound and deep relationship that had withstood worse—the death of Wade—and that after that we had stood together and slept together and worked together.

His face now told me that he had never entertained the idea that I would not be a part of his life, even the center of his life, no matter what. He now knew to a certainty that I would die and he would live on without me and he was afraid. It was not yet clear whether I could forgive his transgression or whether I would continue to stand beside him, but that did not matter. None of that had anything to do with our prospects now as we sat in the hospital. What was clear was that I would not stand with him in all that life would send his way because cancer would take me at some point and he would be alone. The constancy of the love that had kept us together, had kept me with him, had been sorely tested, but now it was not what I would do faced with his indiscretion that mattered. Cancer was writing the script now. Cancer would decide. And, realizing this, he broke down with fear and love and regret. And once again I was the woman who had chosen him thirty years before and built a life and family with him. We were lovers, life companions, crusaders, side by side, for a vision of what the country could be, and we were an old married couple. At least for a while.

And that part about crusading together, it was the glue. Whatever might be ripping at our lives together, the cancer was stronger, but maybe the crusade was stronger too. And with the strength of these battles in which we were so clearly united, we would regain our strength. I grabbed hold of it. I needed to. I needed him to stand with me, and although I no longer knew what I could trust between the two of us, I knew I could trust in our work together. This was the life I had before the doctor's grim diagnosis. Is it so hard to understand that I so desperately wanted that life back, back before all the words and acts that might have separated us? I could not simply retreat to my home with nothing but death in my future. It might be hard to understand, but I had done nothing wrong at all, and yet my life, so carefully constructed, so carefully tended to, was being eaten away. What did I have to do to rescue it, to mend it back to how I wanted it to be? I got some hints as we waited.

The words of the nurse who was putting in an IV line about John's dedication to health care, the holding-my-breath looks of the others who were awaiting scan results and the smiles they broke into as John pushed my wheelchair by them, the memories of tested but hopeful faces I had seen for the last five years as I crossed the country, I grabbed on to all of them. I could do this. I would do this. I found a dance partner, one that allowed me to dance with a husband who had disappointed me and one that allowed me to dance for my children—a dance of an intact family fighting for causes more important than any one of us. It had been part of our wedding vows thirty years earlier in a country church not two miles from our home today—to work for a more just world—and John asked if we could renew those vows that summer when we had our thirtieth anniversary. I could do this. I would show my dear children that I was alive and that it really only matters how we handle our worst moments, and see what Mother is doing? See how Daddy is helping?

In the next hours, we sat with our closest staff—all friends for years, soldiers in the same war—and we told them, their eyes filled with tears, that the cancer had metastasized but we would continue to campaign. John's indiscretion seemed a million miles away; I cannot say I even thought of it. I thought only of the bright spots on the bone scan, in my hip and on my ribs, and of my doctor's conclusion that it was not good but also not dire. We hugged everyone and smiled and planned for tomorrow.

And writing this, it seems so simple. All the fear seems to be but a setting for some larger battles yet to be waged. And yet in the moment, the pain and the fear were real, overshadowing, dark, and I had to find a partner bigger and stronger and more important than my own cancer. I was lucky, for I had been dancing with that partner for years.

We chose to announce the metastasized cancer publicly—although I did not know with any real certainty what my prognosis was—and to continue with my husband's political campaign—although I did not know the prognosis for the campaign, either. I only knew that both were alive that day and that all I could do was to make today count. I did the only thing I knew to do: I pressed on with what still seemed important to me. It probably doesn't matter so much what those things are. What mattered, in order to put one foot in front of another, was that there was some reason to do that, some reason to get up and shower, some reason to make what remained of my hair look reasonable, some reason to, well, live even though the hand life had dealt looked increasingly bleak, increasingly lonely.

I am guessing that I am not the only cancer patient who does not talk about fear. Or who doesn't know what to do with talk of anything more than a year away. Does it matter where the Olympics are held in eight years? Maybe not for me. So when there is such talk, my mind immediately wanders: How long will I have been dead by then? And just as quickly I push such thoughts away. Part of resisting the disease is captured in simply not letting the fear of tomorrow control the quality of today. The Rodgers and Hammerstein song from
The King and I
makes the point better than I can: I whistle a happy tune, and every single time, the happiness in the tune convinces me that I'm not afraid. Powering through the fear may seem like denial, but fear doesn't change the prognosis. It only changes the way I would feel between now and whenever the inevitable occurs. So that is what I did. And it worked, at least at first.

When I watched my father die in 2008, I looked at a body too weak to fight any longer, his skin smooth and milky and thin, his eyes with a film over them separating his world from ours. “You can go if you want,” I told him when we were alone before the others gathered, “but if you can, wait for everyone to get here. Then you can choose.” And he did hold on, he held to the tiniest thread of life until his family gathered in yet another hospital room and until each of us said what we needed to say, until we all laughed about his years of foolishness and cried about his years of foolishness, until we sang to him and read to him and held his hand. Until we knew it was time to stop. The nurses turned off the machines that warned us how close he was to death, and we waited together quietly, reverently, until the green line on the one remaining muted monitor went silently fat. His sister didn't know when it happened, my mother no longer understood even that he had died. But he did know; someplace in him he knew, and I can almost imagine the wink he would have given if he could as he slipped out the door, leaving the rest of us, the living, alone.

And that is as good as it gets.

Like the rest of us—for we are all dying—I am dying. I haven't any idea how long it will take for the cancer now metastasized at least to my bones to strangle life from me; I haven't any notion of whether the medicine I take today will stave it off for another month or another year, and I do not know what comes next when this medicine starts losing its battle with the cancer cells.

And it teases me—or I tease myself with the fear of it. I was traveling in 2007 when I felt a rough spot on the back of my neck. No matter how I turned the single hotel mirror, it would not reveal the mark I was feeling. When I came home, I checked. It was long and brownish and rough. Had the cancer metastasized to the skin? Was that even possible? I did what I promised myself I would never do: I googled “skin cancer” and sat at my computer with two mirrors and a screen full of images. As I compared them, Cate walked in. She looked at the screen and in a cautious tone she asked, “What are you doing, Mom?” I tried to sound nonchalant: “Oh, I felt this rough spot on my neck,” flicking my hand over the spot in as carefree a way as I could manage. “Just checking on what it might be.” She looked at the images on the screen, and she looked at the place on my neck. Then, turning to leave, she said with real nonchalance, “I don't know what skin cancer looks like, but I do know what a curling iron burn looks like.” Two nights of going to sleep rubbing the place on my neck, measuring the feel of it, and it was a curling iron burn. Death averted, or just stupid fear? Stupid, mind-numbing, all-encompassing fear.

Sometimes the fear is justified. As I was writing this book, through the fall of 2008, I felt a pain in my back. It would come and go, but I am prone to move things that are too heavy or to lift a child I should not, and I let myself believe that was all there was to it. Just as I had done when I found the plum that must be a cyst in my breast three years earlier. When I go every two weeks to the hospital for my chemotherapy infusion, I see Jerome. He is gentle and patient, a beekeeper by avocation, which seems perfect to me somehow—coming close to what could hurt him but never getting hurt because of that gentility. Jerome would ask me as he took my blood pressure and prepared my biweekly IV infusion whether I had any new pains. “Some back pain,” I would answer, and he would write it down. Jerome would tell Dr. Carey, and Dr. Carey would tell me if it required any special attention, so I could forget about it. Until the next pain. But as Christmas approached, the pain became more frequent, and I could pinpoint where on a rib in my back it was centered. Again I did what I no longer bother telling myself not to do: I googled “bone cancer and symptoms.” The intermittent pain was there on the list of symptoms, in words I might have written to describe my pain. We moved up the scheduled MRI.